In the Middle of a UC Flare Up

Jenny T with cat and colitisIntroduction:

UC and IBS patient for 12 years
On Asacol and currently Rowasa
Take Zoloft 75 mg for anxiety and 1 mg of Ativan when having an anxiety attack

My Symptoms:

having a flare since may

My Story:

I am so glad I found this community. I am currently suffering with my UC and having a flare up off and on since May. I have been on Asacol for the past 12 years and am now also on Rowasa. I just feel like I have the flu all the time, I’m irritable and I feel like nothing is helping. Ive had a few accidents which has sent my anxiety in a tail spin.
Since I had two accidents in my car, I have anxiety every time I leave the house. I take Zoloft and Ativan when I’m having severe anxiety, but it seems lately I keep getting panic attacks.

Last week my doctor and I agreed to have blood tests to see if I could go on 6 MP. I’m nervous about changing medications, but just want some relief.

I have taken rowasa in the past and it made me feel a little better. Then went off of it and then when I had the two accidents a few weeks ago my doctor put me back on it.

I just feel like Ive had enough already. I have been on prednisone three times so they don’t want to put me back on that because i will only be able to go back on it one more time. And I’m glad about not going back on it because I HATE the side effects of it.

But lately I cant leave the house except to go to work and I feel like I have absolutely no life and I just hate what I’m dealing with. I know I am not the only one going through all this and I am glad I found this community to vent :)

Can anyone give me some words of advice and encouragement? I would sincerely appreciate it.

Where I’d like to be in 1 year:

not having a flare

Colitis Medications:

been on Asacol 4 tablets three times a day

written by Jenny T

Submitted in the colitis venting area




asacol

16 Responses to In the Middle of a UC Flare Up

  1. Bev September 9, 2012 at 6:49 pm #

    Hi Jenny!

    I can give you some words of encouragement! I have had the dreaded UC for about 13 years. I have, or had been on asacol for the whole 13 years. I don’t know whether it ever actually helped at all, but I do know that now that I am off all meds, I feel fantastic! I know…how can I be off all of the meds? Well, I was recommended a good probiotic one capsule per day by a health food vitamin store clerk about 7 months ago. Well, after taking if for about two months, almost all of my symtoms went away! I decided to wean off of the 12 asacol pills that I was taking every day. Little did I know that they were actually making me feel nauseated, and were making my stools looser and bloody. The more I weaned off the asacol, the better I felt, and the more the colitis symptoms went away. I had a bit of bleeding still, so I went back to that ‘smart’ clerk at the vitamin store, and she recommened L-glutamine, to stop the bleeding. She said it would heal the mucosa of my colon. Two days…that’s all it took…and there was no more bleeding!! No kidding! I’ve been in complete remission ever since. 7 whole months…DRUG FREE. Just one 50 billion probiotic capsule, and a scoop or two of L-glutamine mixed with juice every day! Simple!!!

    How is that for encouragement? My doctor said I could NEVER go off UC meds. That I needed to take them forever. Well, I now say bulls**t! I feel NORMAL again. I also eat whatever I want!!

    I’m not telling you to stop your meds…but they do make symptoms worse in alot of people, and we aren’t even aware of it! If they aren’t working, then they aren’t working. Simple. If a good probiotic works, then it works. Simple. You have to give it time to work, though. A few weeks at least.

    I’m not a doctor, but I have lived this, and it is true. That is all I’ll say!!

    Cheers:)

    • Jenny T
      Jenny T September 10, 2012 at 9:35 am #

      Thank you Bev and Torie

      I actually already use glutamine and probiotics.
      I appreciate whatyou are saying about my meds, but I trust my dr and would never stop medicatio just because of a holistic route.

      Although I do use probiotics and all the other herbal remedies, I still take my asacol. I am actually doing much better since last Friday. The Rowasa seems to be helping a great deal.

      I appreciate both of your support. Its not a fun diease, and sometimes being in my late 30s and still single, I feel like Ill never find anyone that understands.

      Its so nice to know that people out there are going through the same thing.

      • Bev September 11, 2012 at 9:29 am #

        Yes, Jenny, if you find that the meds work for you, then by all means, don’t stop taking them.

        It’s not like doctors know nothing at all, right?!

        Cheers, and continued success!

        Bev:)

    • Andrea March 13, 2013 at 8:42 am #

      What probiotics were in this magical pill? What was the brand name?

      • bev March 13, 2013 at 11:45 am #

        ULTIMATE FLORA CRITICAL CARE by RENEWLIFE.

        That is the probiotic that is keeping me in remission….along with powdered fermented L-glutamine.

        Cheers
        :)

  2. Torie
    Torie Walsh September 10, 2012 at 4:00 am #

    Bev, I second what you do. Glutamine is awesome. it’s great for inflammation.
    And a good probiotic to replace bacteria in your bowel.
    I also take vit D for my immune system and a protien powder (made from chickpeas)
    mixed in my home made organic vege juices. That’s for my white blood count (immunity).
    I can’t digest meat easily but I know how important protein is. And juices for the same
    reason, Because people with bowel disease can’t get enough nutrition and sometimes
    tablets go straight through and come out whole and undigested.
    And remember ,,,You are doing a great job. Keep moving forward.

    • Bev September 10, 2012 at 12:52 pm #

      Fantastic Torie!!

      So happy to hear it’s working for you. You have been though quite alot!

      YOU are doing great!! Remember that!!

  3. Cameron
    Cameron September 11, 2012 at 8:51 am #

    Hi Jenny,

    First of all, I am so sorry to hear about what you are going through. Prolonged flareups are incredibly depressing and it can be difficult to see the light at the end of the tunnel. It also feels very isolating because you feel as though people without UC will not understand your situation. I remember canceling all of my plans and staying in the house for weeks at a time, even missing university classes. It will get better- just take all the time you need to relax and recover and stay in touch with your body and your mind. Listen to your body and don’t push yourself.

    I am with Bev and Torie on trying some natural remedies in addition to your medication. Medication can be fantastic but there were times when meds did nothing for my flareups and it wasn’t until I found a natural remedy that I was able to recover. Something that has worked very well for me is a supplement called Greens+. It comes in both pill form and powder form (that you can mix with juice). It is a mixture of dehydrated fruits and vegetables and it has helped to calm every flareup I have had over the past four years.

    I am currently inflammation-free and I attribute this largely to remedies other than medication- counseling, yoga, Greens+, and a healthy diet. Have you considered trying counseling to improve your emotional health? It helped a great deal for me and I know that my physical health improved after strengthening my emotional health through therapy.

    Wishing you peace and comfort during this difficult time.

    • Bev September 12, 2012 at 12:15 pm #

      Great advice Cameron!

  4. Lisa October 4, 2012 at 6:34 am #

    Wow! These are all great advices :) I’m currently taking Asacol and still have UC symptoms. Thank you all for sharing your advice and encouragement to Jenny because your responses is encouraging me also! I’m willing to try anything to calm my disease.

  5. Jenny T
    Jenny October 4, 2012 at 4:38 pm #

    guys I appreciate your help, I am doing fine now. Thank you

  6. sabine December 21, 2012 at 11:29 am #

    hi my name is SAbine
    i have not posted in a long time
    i have to agree on the point that most Meds can actually make you sicker and drug resitend, also in our case transit time of stomach emtying is so fast we dont get half of the meds.
    aperantly Anxiety is a big part of Uc,make sure you get enough Magnesium if you have lots of Bowelmovments.
    i have UC FOR 8 YEARS NOW ,AND IT IS A CONSTANT ROLLERCOASTER.I HAVE TRYED ELEIMINATION DIETS..NO LUCK UC DIET …NO LUCK,FOR ME IT SEEMS TO MAKE NO DIFFIRENCE WHAT I EAT,IT NEVER LEAVES ME.
    ON TOP I JUST GOT DIAGNOSED WITH BREAST CANCER,THIS IS WERE IT GETS INTERESTING,IN MY NEXT FEIGHT FOR MY LIFE I CAME ACROSS THE movie Forks over Knifes,i was fixed in front of my tv watching it 4 times back to back,whenn i had my aha moment.i was going to follow a strikt plantstrong diet,eat nothing with a face or mother,and no no no Dairy non ……no fake soy foods ,good old fashion whole food. well my c r p markers that indicate inflamation or onset of cancer went from 15.2 in november 2012 to 1.2 in december.i made it easy i bought the books by DR MC Dougall and followed his plan…one side effect i am of prednisone the first time in 8 years,i found out trough asking the dear Dr questions on the Breast Cancer that he treats uc and crohnes with the same protocoll, exepthe eliminates gluten at the beginning to rule out any problems there…i did that i was not intollerant.i have lost all my prednisone bloath,i am lean at 5″6 118 pounds and a flatt stomach again that i have not seen for 8 years.it is of all things a starch based diet, this Dr has been at this for 40 years…..so i am a vegan,i started his plan 2 months before my Partial Masectomy,my lymphnodes were clean and nothing had spread…..lucky?? wonder.i am plantsrong and will never look back.as far es my colitis, this is my first Christmas not in Bed in 5 years

    • bev December 21, 2012 at 4:18 pm #

      Wow, Sabine…wow!

      Very very interesting!!

    • shelly in maine December 21, 2012 at 5:40 pm #

      Sabine,
      :-) I saw apiece on that a while ago on Dr. Oz or some show like that. Seems to make sense, like SCD, except vegetarian…more like David Klein, the the “other” Adam wrote about and i read many years ago….I think also maker’s diet,too? Anyway, all anti inflammatory.
      Thanks for your update and good luck continuing on the road to Total Wellness.
      You should write a new story and share!
      Merry Christmas and happy,healthy new year! :-) best, Shelly

  7. Charlotte hull May 4, 2013 at 10:49 am #

    Dear Bev. Hi I’m Charlotte, 35 from London. I got diagnosed with colitis 3 years ago and have been on apathy orpine for most of that time. I came off in December last year as I was in good shape until two weeks ago when the flare ups came back in full force! Been in bed for a few days wi no enery. It’s so frustrating as I love my life so much and hate to be held back like this. I can’t get the bleeding to stop so they’Re trying me on asacol as I do not want to go back onto an immune suppressant! However, I’m really interested in what you say about the probiotic pill so I’m going to seek it out tomorrow. Did you buy it in Uk?

    Many thanks and stay strong people!!!!!

    Charlotte xxx

  8. Iqbal Naiyer June 25, 2013 at 12:17 pm #

    May 31st, 2013, after suffering for 3months and being on 8-diiferent anti-biotic trial and error by doctors finally through colonscopy I was diagnosed with severe Pancolitis (UC). I am on High doses of Prednisone, Asacol and Canasa, seems like bleeding is stop and diarrhea is now almost cut to 10-12x vs 30+ a day. well, I also did a lot of research and following the SCD diet based on “Breaking the Vicious Cycle by Elaine Gottschall” I had to accept the fact it’s hard to follow but we need to do what we need in order to recover from this unwanted disease, also I start to learn how to cook and make my own yogurt using Yogourmet maker. along with all these, what helping me is probiotics (currently I am taking VSL#3 DS-(20 Pack) – Prescription Only along with Non-dairy Saccharromyces Bolardii+Mos probiotic, Theralac (bio-Replenshing probiotic), Vitamin D, Omega 3 fish oil, and B12).

    I wish each and everyone for faster recovery and thanking you all for sharing your experience to educating me more on this disease, well reality is that UC isn’t what my life is about. now, It’s just part of it(-: now I just have to get better and move on with life.

    Iqbal – San Francisco.

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